Low Cortisol and Working out when your Low
Being someone with Adrenal Insufficiency means I have to monitor my Cortisol levels day in day out. A normal healthy person naturally produces Cortisol (the stress hormone) as and when the body needs it. For someone with AI however, there is no immediate way to monitor cortisol levels and this has to be done purely by how you feel. It can be incredibly difficult and hard to know when you need extra medication, especially as being low in cortisol often means brain fog and difficulty to work things out.
Having said this, I’d like to share ten tips to help work out when your low in cortisol. I wish to credit Alison Campbell Hill for these suggestions and tips. Alison is a member of the Addison’s Disease Support Group on Facebook and gave permission for this to be shared.
Although these are useful tips, any serious concerns regarding low cortisol and hypo-adrenal symptoms should be discussed with a GP or your Endocrinologist as low cortisol can lead to a life threatening Adrenal crisis.
10 Tips for recognising low cortisol Symptoms
1) When first diagnosed it is common to start on a higher dose than needed and SLOWLY (2.5 mg every two weeks or even slower) cut back to find your dose and dosing schedule that controls symptoms “most of the time”;
2) Low cortisol symptoms generally come in groupings of two or more. Learning your individual low cortisol symptoms is critical. If you are unsure, bump your HC by 2.5 to 5 mg and wait 30 minutes. If it’s better, then your symptoms are at least partly caused by low cortisol and this needs to be corrected.
3) Anyone can experience low cortisol symptoms at any time. An extra stressor (physical or emotional) like more activity than normal, a stressful event, lack of sleep, etc. can cause a need for more steroid/cortisol. However, if this is happening frequently, you need to figure out why. Is your overall daily dose sufficient? Are you spreading your doses with more in the earlier part of the day to best give you even coverage and control the highs and lows?
4)Do you have other conditions, like thyroid, vitamin deficiencies (b12 and Vit D are big ones), etc that have not been identified or are not being well controlled? Do you need Florinef or more/less Florinef (doc should be checking renin). Do you have an infection? Are you in a lot of pain (low cortisol can cause pain in muscles/joints and if cortisol is low often pain meds for other conditions will not be as effective).
5) Track symptoms at least before each dose of HC and anytime symptoms are significant, along with time/amount of HC doses, heart rate, blood pressure, blood glucose and temp. When these things are in normal ranges and stable generally cortisol is good. Where they get wonky it may be indicative of highs and lows and also other conditions that may be affecting things. This can REALLY help you and your Endo figure out your proper dosing and identify other issues that might be going on.
6) If all else fails and you are still experiencing low cortisol symptoms frequently, ask for a day curve to see if you are having a problem with absorption and/or metabolizing your steroids too fast. In which case there are alternatives, like longer-acting steroids (Prednisone) or Solu Cortef shots and the adrenal pump.
7) Hang in there! It can take a lot of work for some of us to figure things out. We are all different. Different people do better on different steroids but HC is preferred if it works. Different bodies need different amounts of steroid, some people do well on 20 mg a day and some need 60mg. Different bodies are affected differently/more severely by extra stressors for example some people are affected greatly by emotional stress and some aren’t. Some people are affected greatly by exercise and some aren’t.
8) Have a good endo and pcp that supports you and is working “with” you for your optimal health and quality of life. If you don’t have that, keep looking. Good ones are out there.
9) It is not unusual for it to take 1, 2 and even 3 years for someone with AI to fully stabilise and heal.
10) You can find reliable information that is supported by respected AI organisations major medical centres and qualified Endocrinologist about all of this in the files in the Addison’s Disease Support Group on Facebook. Education is CRITICAL. Be kind to yourself and keep moving forward!!
Okay, well I hope this is really helpful for those with the illness or living with people with AI, especially to newly diagnosed AI patients and those who are struggling continuously. Also this can be an interesting read to help other’s understand what is involved in working out your symptoms.
Angela Milnes xx
Angela Milnes xx